Looking for what to expect as I consider Kidney Transplant

@janmitchell2003, Good Morning and Welcome to Connect. Here you will read about and meet many others with similar experiences. We all have unique health histories, and unique needs and outcomes. You might already be aware that the path to transplantation is equally unique. We are here to share our own experiences and to lend hope and to share ideas to help and to encourage each other.

I am a liver/kidney recipient. My organs are from an anonymous deceased donor. I was 60 when I transplanted. We have members who have shared about living kidney donation. Here are some discussion that I think will be of interest to you. I invite you to read, or comment, or ask a question in any of our conversations.

- Living Donor - https://connect.mayoclinic.org/discussion/living-donor/
- The Journey from the Donor's Side - I recommend it as a source for hope and inspiration.
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
- Recipient Toolkit on the Transplant Pages is an excellent resource that can provide you with some additional information.
https://connect.mayoclinic.org/page/transplant/tab/resource-35/
Rosemary

@janmitchell2003 In January, I donated a kidney to a 61 year old woman that I learned about through her daughter on Twitter. I am 52. We had the same blood type but none of the other markers matched. There was testing done to see if there was anything that would make her body reject my kidney and found none, so we were able to proceed.
If I didn't match at all but still wanted to donate, I could have opted for a paired donation. That means she would have still been my "recipient" but in name only. I would have donated to someone else in the paired system and she would have received a kidney from someone else who was able to donate but did not match their intended recipient. If you find a donor through social media, church, a neighbor, the grocery store etc, they don't have to match at all. They just have to be willing to donate. through the paired program. Your husband would be guaranteed a kidney from someone in the system as long as the person you found continued with their donation.
That was hard for me to explain in writing, if someone can explain it better, feel free!

Is this group still active in 2022 for kidney transplants. I am new to the site and still learning how to get around but the most recent post I see in this group in 2018.

@kandyh, Good Morning, Kandy, and Welcome to Connect. I am a liver and kidney recipient, and a mentor. I assure you that any discussion, regardless of the date stamp, contains meaningful patient experiences. You can activate (bring to the forefront) any discussion simply by making a comment as you have done. As member on Connect you are welcome to join in any discussion anytime.
Kandy, I would like to help you get started by asking you - What brings you to Connect?

I am here for my 33 yr old son. He is a childhood cancer survivor and had a bone marrow transplant when he was 13. He has done exceptionally well follow that transplant. However radiation and antiviral meds caused the start of his kidney damage. Over the years they worsen but were “hanging in there” until he was given remdiziver last November and lost kidney function and has been on dialysis since. Intially we had 3 possible donors but all 3 have been eliminated for health reasons. We are in Houston and have quite a few transplant centers in our area. But non offer non- steroid protocols for post kidney transplant. My son has a lot of difficulty with even low doses(5%) of prednisone. We are hopeful Mayo can help him.

@kandyh, I found this information about non-steroid protocols under the information about the Kidney Transplant Department at Mayo Clinic.
-Steroid-free immunosuppression protocols
https://www.mayoclinic.org/departments-centers/kidney-transplant/steroid-free-immunosuppression-protocols/
Kandy, If I were you, I would contact Mayo. You will see a "Contact Us" with phone and email contact information.
I hope that there is a solution for your son's complex situation. Will you let me know if there is a non-steroidal medication that can be substituted for him?

Hi @ca426 😊
It's very nice to meet you! I saw in your post you mentioned three kidney transplants. How long did each transplant last and what was the cause of the transplant failures, just chronic long term rejection over time or an acute event?

You mentioned heart problems as being one of the long-term effects of dialysis. Can you elaborate on that statement....what kind of heart problems? what other kind of problems? My husband hopes to start dialysis in January 2023, and is currently being out-fitted with the portal and line. He is currently at GFR 15, or lower now, and has received the initial, preliminary paperwork from Mayo-PHX for a kidney transplant. Several years ago he had an aortic valve replacement during which he had a stroke (recovered fairly well).
Sarah.

Don't be hesitant, if you can get a transplant go for it. I got both a liver and kidney February 10,2021 and another kidney in November 2021, first kidney let me down. I wouldn't bat an eye if I had to do it again. I was on dialysis prior to transplant, yes it kept me alive but I felt beat up the rest of the day. I am sure maybe everyone is different. I went home after 5 days. Again everyone is different.
Best to you, you need to decide for yourself! Ask God for his opinion as well!
Good luck to you 😊

@sarah82 Every patient is different, and this holds true for Chronic Kidney Disease people, too.

What is important, is that your husband and his medical team discuss all the variables, and take his past health history into consideration when making decisions. Knowing the cause of his kidney disease is a good thing to understand how he is at the point he is at. Will you share that? The main causes of kidney disease are uncontrolled high blood pressure, diabetes, hereditary factors, and long-term effects of certain medications.

Here is an article from the National Kidney Foundation about the role of a healthy heart while on dialysis:
https://www.kidney.org/atoz/content/hearthealthydialysis
Please feel free to reach out if you have additional questions or concerns!
Ginger